title: Ventilator dependency: decision-making, daily functioning and quality of life for patients with Duchenne muscular dystrophy.
abstract: Ventilator assistance is offered to patients with Duchenne muscular dystrophy as an option to extend life. This paper discusses the effect of respiratory difficulties and the subsequent quality of life for 17 patients and 14 family members living in the community. Areas covered included decision-making, health, education, vocational and recreational status, community resources and life satisfaction. Activity levels before and after ventilator use were assessed. Despite restrictions in daily life both before and after ventilator use, quality of life was fairly good. Restrictions in daily life were caused by a combination of progression of the disease and the ventilator, and family members were more burdened by the ventilator than were patients. It is concluded that patients and their families should make the decision about accepting or rejecting assisted ventilation.
authors.affiliation: Department of Rehabilitation Medicine, Tufts University School of Medicine, Boston, MA.
authors.forename: J R
authors.initials: JR
authors.lastname: Miller
authors.forename: A P
authors.initials: AP
authors.lastname: Colbert
authors.forename: J S
authors.initials: JS
authors.lastname: Osberg
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D000328:Adult; D002648:Child; D006699:Home Care Services; D006801:Humans; D033181:Information Dissemination; D009136:Muscular Dystrophies / Q000523:psychology* / Q000628:therapy; D010353:Patient Education as Topic; D010358:Patient Participation; D010865:Pilot Projects; D011788:Quality of Life; D012131:Respiratory Insufficiency / Q000523:psychology* / Q000628:therapy; D012803:Sick Role; D012122:Ventilators, Mechanical